January 27, 2017

This has certainly become a journey of ups and down and the new year hasn't started off as we had hoped.  Brian went for chemo on Tuesday, only for it to be cancelled for a second week in a row.  His white count ANC (neutrophils) were only at 0.4, way too low to administer the chemo.   His back pain has been unrelenting and he has been trying to take his morphine on a more regular basis to try to keep it to a minimum.  Of course, the nights are worse, he just cannot get a good night's sleep, waking from sleep every 2-3 hours, only to need more pain medication.  The daytime pain is more tolerable, but Brian is sleeping a lot throughout the day as he feels so exhausted.   Friday was a big clinic day as Brian was scheduled for a CT in the morning, blood work after that and then we saw Dr. McCarron in the afternoon when all the "rushed" results would be back.  It was a long uncomfortable day for Brian having to be at the hospital for 5-6 hours, sitting is definitely not the best for his back.    So, the CT scan ended up showing severe degenerative disc disease in his lower back with compression of the lumbar vertebra 3 on the vertebra below.  There is some mild disc bulging and spurs, and narrowing of the spinal cord - spinal stenosis.  She says most of this is not cancer related, although the compression of L3 could be caused by the cancer, due to the weakening of the bones.  For the most part though, the degenerative disc disease is not caused by the cancer.  She recommended a referral to an orthopedic back surgeon who can assess him and may be able to operate where they put cement between the vertebra so they do not collapse on one another.  She said the name of this procedure, but I can't remember what it was now.  Once again, just too much information overload! She also gave Brian a more potent narcotic, Dilaudid (hydromorphine) to hopefully help a bit more with the pain, especially through the night.  He has taken it over the weekend and although Brian feels it does work better than the morphine, it still does not allow him to sleep through the night.   Dr. McCarron also recommended a referral to the pain clinic to help him manage the pain.  Breanne has some friends who recommended that we see a friend of theirs who is an anesthetist and specializes in pain and has a clinic in the Toronto area.  He told them that he would be willing to see Brian urgently, we just need to get our doctor to make the referral.  So we are going to pursue that option for sure.  

With respect to the blood work on Friday, his white count (ANC) was still very low and she said his marrow is having a hard time recovering from the chemotherapy; so she told me to give Brian an injection of Neupogen over the weekend, and on Tuesday we still go for chemo, but she is going to only give him the velcade and the dexamethasone, and eliminate the cyclophosophamide for the next two cycles.  She is going to see how that works with regard to his white count and then we are to see her again in two weeks for further decision-making before the next round starts.  These two weeks are to try to finish off the round we are on right now, but have had to miss two weeks due to his white count.  

We asked her about the reasoning for continuing chemotherapy and she said that the government sets out the guidelines for any particular chemo which is based on studies and what is best for the patient. She says the 8 to 9 rounds of CyBorD gives the longest remission after.  The longer it is given, the longer the remission rate is after it is finished. So if you stop mid-way, the remission is probably 4 months and if you go the full therapy, it gives you 6 months after stopping before recurrence.   Also, if you stop before the full course, it restricts the chemo that can be used for recurrence.  This is how we understood what she meant anyway. As I say, so much information, it does become overwhelming at times and we sometimes wonder if our interpretation of what we are told is correct! 

So that is where we stand for now.  Brian is not able to do much with this back pain, he can't even go for our daily walks with Timmie.  He is able to get about though and tries to be as active as he can without overdoing it, he does some light stretching to try to keep his muscles pliable.  In all, it is dragging him down, I can see it, although he does an amazing job of keeping positive and going one step at a time.  He ends up watching a lot of TV to try to pass the time and of course with all that is going on south of the border, that news is just depressing; we are just so tired of it all.  

We will forge ahead and hopefully soon we can get Brian's pain management under control! I think I heard the other day that it is only 7 Mondays until Spring!! 

Happy New Year - January 2017!

I have been a little remiss at keeping up my blog in the last few weeks.  It has been a busy time, and for the most part, I just haven't taken the time to sit down and write.  I hope all our blog followers had a wonderful Christmas with their families and friends and now look forward to a happy and healthy 2017.  We had a great Christmas with our family and enjoyed watching our grand-kids enjoy their presents!  We love the excitement of it all!

Here are a few pictures of our family together on Christmas.

Since the last time I wrote, chemo for Brian has gone pretty well for the most part.  We got through about 7 weeks of not missing any chemo and Brian's blood counts were all really good; his white count (ANC - neutrophils) was staying well within the normal range.  Brian was feeling relatively okay other than the usual side effects of nausea, tiredness, etc.  Then about a week before Christmas he started to develop lower back pain which seemed to wax and wane, but then right after New Year, the pain was becoming quite severe; so much so that he was having trouble sleeping or even being able to find a comfortable position to sit or lie down.  He could no longer go out for our daily walks with Timmie and was trying to rest it as we are hoping it was just muscular.  I ended up calling our oncologist about it and she brought Brian in for lumbar/sacrum x-rays and gave him some Tylenol No #3 to help with the pain.  Tylenol No 3 was of no help at all and the following week, she then prescribed Morphine which also didn't seem to touch the pain. Of course, the x-rays didn't show anything, but x-rays are not the best to show bone lesions and now Dr. McCarron has ordered a CT scan.   

We went for the usual Tuesday chemo this week (Jan 24), only to find that his neutrophils were really low again - enough so that they cancelled chemo for this week.  We were actually very happy to not have chemo, hoping it would give Brian a break and help him feel free of the nausea and maybe the back pain.  Dr. McCarron has scheduled a CT scan of his lumbar/sacrum area on Jan 27 (next Friday).   We have found this week that even without having chemo, Brian is suffering badly with the back pain, especially at night, can't find a comfortable position and keeps going out to lay on the couch which is about the only place where he can find some comfort at night.  The chemo nurse explained to us that he was not taking the Morphine correctly in that he needs to take the Morphine more regularly and not just wait until the pain is bad.  He has to nip it in the bud with the Morphine when the pain is 4-5/10 and not wait until it is 8-9/10.   So, Brian has been doing that this week, but still to no avail.  The pain is not too bad during the daytime, but night-time it is almost unbearable for him.  Anyway, not much we can do until we get further results of the CT scan (if that shows anything).  If it doesn't then I assume it is either nerve or muscle pain, but we have no idea what would have caused this.   We are a loss to explain it.  Breanne has been reading some multiple myeloma forums on the internet and other patients have said the same about bony pain in the back and it seemed that some patients said that once chemo was done, the bone pain abated as well.  So, we are also not sure if this pain is actually caused by the chemo. The chemo is attacking the bone marrow, so it does kind of make sense, but does this mean he will be suffering until May when chemo is scheduled to stop?  We just seem to have so many unanswered questions as no one seems to be able to give any explanations and testing for things takes time, meanwhile he suffers, as pain meds don't seem to be working!

Both Brian and I are feeling that Brian needs a break from chemo (he has been on chemo since August), but we will have to see what the doctor says as we are going to ask what ramifications there are if he elects to stop chemo now.   They have their regimens of what works best, so we have to make our decisions from that.  We would really like to end chemo and just start maintenance since Brian is supposedly already in remission, but we have to see if that is possible at this point. If this back pain is chemo-related, I just can't see Brian going through until May suffering like this.  Through this though, Brian has to be commended for still keeping such a positive attitude, he still has a smile on his face, and just keeps forging forward.  I'm not so sure I could be that way if our roles were reversed!  He always makes my care-giver role easy as he never complains.  I love him dearly for that! I just wish I could do more some days.  

I will update again once we have the results of the CT scan.  Meantime, we will carry on as normal and hopefully soon Brian can get over this back problem!